THE 8 STEPS - World Visionthe WHO’s eight steps of wheelchair provision, as outlined in Guidelines...
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THE 8 STEPS + The role of community development organizations in providing holistic wheelchair services
Transcript of THE 8 STEPS - World Visionthe WHO’s eight steps of wheelchair provision, as outlined in Guidelines...
THE 8 STEPS+
The role of community development organizations in providing holistic wheelchair services
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In wheelchair programming, collaboration is critical to success.
Community development organizations must work with
skilled wheelchair service providers to ensure that people with
mobility limitations receive wheelchairs suited to their anatomy
and local environment. Service providers must be trained and
supported by technical experts to acquire initial capacity and
maintain and further their expertise. Technical experts must
work with community development organizations to reach
out to remote communities and help them access community-
based referral and follow-up services and disability-inclusive
programming. These connections are crucial to creating better
outcomes for wheelchair users.
Community development organizations are well suited to
deliver results for people with disabilities because of their
established community relationships and experience with
vulnerable populations. A deeper understanding of how
community development organizations should participate in
wheelchair services will allow us as practitioners to move away
from a historical dependency on the distribution approach in
wheelchair programming. A well-defined role for community
development organizations in this process will advance high-
quality wheelchair services, allowing wheelchair users to take
full advantage of their new wheelchairs and experience greater
levels of social inclusion.
This report seeks to highlight how organizations might begin
to make inroads with populations that have physical disabilities.
We suggest a “twin-track” approach that is based on the
World Health Organization’s Guidelines on the Provision of
Manual Wheelchairs in Less Resourced Settings, an eight-step
process, and dedicated disability inclusion programming,
the “plus.” By following this 8 Steps+ approach, community
development organizations can provide appropriate wheelchairs
and empower their constituencies to exercise their rights and
fundamental freedoms. With significant donor attention
shifting toward disability inclusion, organizations taking this
innovative approach can position themselves to become
leaders in the field.
An innovative five-country pilot, the ACCESS project, aims to
change the culture of community development organizations
around the idea of wheelchair services. The project funded this
research on best practices and lessons learned by World Vision
in order to identify the unique contributions that community
development organizations can make. We look forward to
future initiatives that will provide community development
organizations with additional perspectives.
Sincerely,
The Core Management Committee of the ACCESS Project
PREFACEWhen community development organizations and technical partners work together to provide holistic wheelchair services, catalytic change can happen.
The WHO’s eight steps of wheelchair provision
+ community development organizations =
THE 8 STEPS+
3
This document is a publication of the USAID-funded
Accelerating Core Competencies for Effective Wheelchair
Service and Support (ACCESS) project. ACCESS is a 3.5-year
program operating in El Salvador, India, Kenya, Nicaragua, and
Romania that seeks to bridge the gap between appropriate
wheelchair services and community development organizations
to ensure that people with mobility limitations can exercise
their rights enshrined in the UN’s Convention on the Rights
of Persons with Disabilities (UNCRPD). Through a unique
partnership consisting of technical experts, local service
providers, and community-based World Vision staff, the
program makes all efforts to ensure that people with mobility
limitations have access to appropriate products through
qualified service providers and enjoy full participation in
their communities.
The ACCESS project would like to thank the staff of 12
World Vision offices around the world who contributed to
the development of this document. In addition, the project
acknowledges the technical contributions of Motivation
Charitable Trust, United Cerebral Palsy Wheels for Humanity
(UCP Wheels), and Motivation Romania Foundation. The
lead researcher on this document was Shelby Stapleton of
World Vision Australia. Sue Eitel conducted a technical review
and edits were done by Andy Bamber. Chandra DeNap
Whetstine is the ACCESS project director.
ACKNOWLEDGMENTS
This publication was produced by World Vision, subaward number APC-GM-0029, through Advancing Partners & Communities (APC), a five-year
cooperative agreement funded by the United States Agency for International Development under Agreement No. AID-OAA-A-12-00047,
beginning October 1, 2012.
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CONTENTS
Preface 2
Acknowledgments 3
Executive Summary 5
Report Overview 7
Research Note 7
Part I: Landscape 8
Part II: World Vision and Wheelchair Services 14
Part III: Getting Started—The Four Pillars 18
Appendices
Appendix 1: Further Resources 36
Appendix 2: A Brief Explanation of the WHO’s Eight Steps of Wheelchair Provision 37
Appendix 3: The 8 Steps+ and Community Development Organizations 38
Appendix 4: Secondary Injuries 39
References 40
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Globally, more than 1 billion people have a disability, with 80
percent of people with disabilities living in developing countries.1
The World Health Organization (WHO) estimates that around
65 million people require a wheelchair for mobility.2 People with
disabilities have poorer health, lower levels of education, fewer
economic opportunities, and higher rates of poverty.3 Children
with physical disabilities are often marginalized and excluded
from educational opportunities and are three times more likely
to die in childhood than their non-disabled peers. Community
development organizations must include people with disabilities
in their strategies if they are to address the needs of vulnerable
populations and reach international goals for education, poverty
reduction, health, equality, and economic growth.
This document results from research done around the
globe on World Vision wheelchair programs. It seeks to
give a comprehensive overview of the role of community
development organizations in the specialized field of
wheelchair services, while illustrating the value that community
development organizations can add to the process. It is
primarily written for the many organizations identifying people
with mobility limitations and distributing wheelchairs unaware
of the international standards laid out by the WHO. Whether
your organization is currently distributing wheelchairs without
the support of trained service providers or is looking to bolster
its approach to disability inclusion and community-based
rehabilitation (CBR), this report—with its many insights and
recommendations—is for you.
Wheelchairs and mobility devices are medical equipment
obtained through a prescription. There are significant
health risks to distributing wheelchairs to people without the
involvement of a trained professional or the health system.
Incorrectly providing a wheelchair can result in life-threatening
injuries.4 Recent research has shown a 30-year difference in
life expectancy between wheelchair users in England and
Bangladesh due to secondary injuries.5 When wheelchair users
are hindered by environmental barriers, social stigma, and a lack
of access to appropriate medical care and follow-up, the risk of
injury is compounded.
Community development organizations should not distribute
wheelchairs without technical support. Strategic technical
partnerships and training are essential to ensuring the health
and safety of wheelchair users and the successful delivery
of wheelchair services. Partnering with disability-focused
organizations that work alongside the health system will
ensure the provision of appropriate wheelchairs, as defined
by the WHO: “A wheelchair that meets the user’s needs and
environmental conditions; provides proper fit and postural
support and is safe and durable; is available in the country; and
can be obtained and maintained and services sustained in the
country at the most economical and affordable price.”6
Community development organizations that adhere to
the WHO’s eight steps of wheelchair provision, as outlined
in Guidelines on the Provision of Manual Wheelchairs in
Less Resourced Settings, and deploy disability inclusion
programming can be a catalytic force for change. This
research suggests that providing appropriate wheelchairs
enhances mobility and can contribute to greater social inclusion
within communities, especially when combined with disability
inclusion programs that provide opportunities for education,
employment, and social support. Termed 8 Steps+, this twin-
track approach allows community development organizations
to create better outcomes for people with disabilities.
EXECUTIVE SUMMARY
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The best outcomes for wheelchair users are facilitated by
two critical factors: 1) a health system that can support
people with disabilities and provide well-fitted mobility
devices; and 2) a positive, enabling environment free from
environmental, attitudinal, and institutional barriers.
People with mobility limitations in developing countries seldom
receive adequate health services and often face environmental,
attitudinal, and institutional barriers that increase poverty
and exclusion (e.g., a lack of wheelchair-accessible buildings
that prevent those with mobility limitations from accessing
educational or employment opportunities). These factors
can be addressed through specific interventions focused on
developing a well-equipped health system and leveraging
opportunities for inclusive community environments for
wheelchair users. This can be achieved by collaborating with
technical partners to strengthen wheelchair service providers
and disabled people’s organizations (DPOs) to ensure the
accurate identification and addressing of issues facing people
with disabilities.
Community development organizations can begin to
operationalize 8 Steps+ by focusing on four key pillars
underlying the approach. Opportunities to engage in this
work already exist through ongoing programming, and in
many cases community development organizations already
have the necessary structures in place to take action.
1) EDUCATION for wheelchair users, staff, and the
community about disability and social inclusion through
existing mechanisms operating in communities.
2) FACILITATION of inclusive and trusting environments for
people with disabilities, relying on existing networks and
strong community roots.
3) COLLABORATION with technical partners and disability-
focused organizations on the implementation of wheelchair
provision and existing community programs that can be
expanded to provide social and economic inclusion activities.
4) ADVOCACY at the local and national levels for attitudinal
and policy change regarding people with disabilities,
leveraging existing advocacy networks where applicable.
Balancing the risks associated with wheelchair distribution
against the catalytic impact of increased mobility and inclusion
in communities, this report provides a clear way forward for
community development organizations to provide holistic
wheelchair services through the 8 Steps+ approach.
The 8 Steps+ approach has the potential to create sustainable change.
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This report is written for community development
organizations like World Vision. The United Nations defines
“community development” as a process in which community
members come together to take collective action and
generate solutions to common problems.7 For the purpose
of this document, community development organizations are
those that seek to promote the community development
process. Community development organizations can be non-
governmental, faith-based, and/or international. In this context,
it is assumed that community development organizations do
not have wheelchair clinical or technical staff and do not have
expertise to conduct appropriate wheelchair provision.
Part I of this report focuses on the global disability
landscape, with an emphasis on the thinking that shapes the
8 Steps+ approach—namely, the United Nations Convention
on the Rights of People with Disabilities (UNCRPD) and the
WHO’s 2008 Guidelines on the Provision of Manual Wheelchairs
in Less Resourced Settings. Part II turns to World Vision’s
evolving thinking on wheelchair services, providing a
conceptual model of the 8 Steps+ approach. Part III provides
a comprehensive overview of current activities and case
studies from World Vision and ACCESS project partners, a
drilldown on the four pillars underlying the 8 Steps+ approach,
and actions that community development organizations can
take to begin to operationalize the approach in context. The
appendices provide additional resources for further exploration.
Research included more than 60 interviews in 13 countries.
Input came from wheelchair users, field staff, national staff,
technical teams, partner organizations, service providers,
and senior project teams working in wheelchair provision
services. Technical input was gathered through JSI-USAID
ACCESS technical partners: Motivation Romania Foundation,
Motivation Charitable Trust, and UCP Wheels For Humanity.
Research was conducted across World Vision offices in the
following countries:
REPORT OVERVIEW
RESEARCH NOTE
• Nicaragua
• Romania
• Rwanda
• Somalia
• Uganda
• Australia
• El Salvador
• India
• Kenya
• Malawi
• United Kingdom
• United States
• Zambia
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Ratified in 2006, the UNCRPD is the first comprehensive
human rights treaty of the 21st century. Its purpose is
to reinforce the human rights of all people with disabilities.
The UNCRPD marks a significant paradigm shift in approaches
to disability—from viewing people with disabilities as objects
of charity to treating them as subjects with rights who are
capable of freely making decisions about their lives.8
A number of articles within the UNCRPD address the rights
of people directly. Article 20 explicitly addresses the right to
access mobility and assistive devices. Article 19 enshrines the
right to live independently and be included in the community.
Articles 24, 25, 27, and 29 address the right to education,
health, employment, and participation in political and public
life. Together, these articles put forth a holistic vision for
programs that address disability through rehabilitation services
and the provision of assistive devices, as well as social and
economic interventions.
In support of the UNCRPD, people with disabilities are
specifically included in the UN Sustainable Development Goals
and are referenced 11 times throughout the 2030 Agenda
for Sustainable Development. Five of the 17 Sustainable
Development Goals (SDGs) address the needs of people
with disabilities in areas such as education, economic growth,
employment, governance, and infrastructure. If implemented
successfully by 2030, the development community may be
able to achieve a more open, inclusive, and equitable world for
people with disabilities.
The UNCRPD and SDGs take disability inclusion away from
being the sole responsibility of disabled people’s organizations
(DPOs) and bring it into the purview of community
development organizations whose primary constituencies
include people with disabilities. The UNCRPD states that
“contributions made by persons with disabilities … will result in
their enhanced sense of belonging and in significant advances in
the human, social and economic development of society and
the eradication of poverty.” Community development
organizations cannot be successful without the participation
of people with disabilities, which can only be ensured through
intentionally inclusive programming.
The growth of community-based rehabilitation (CBR) to
over 90 countries over the past 15 years has reinforced the
role of community development organizations in creating
inclusive environments. In 2010, the WHO published CBR
guidelines that comprehensively join development practice
with the human rights aspects of disability.9 These guidelines
promote community-based and inclusive development that
aims to encourage the mainstreaming of disability into
development programs.
PART 1: LANDSCAPE
1.1 Global Disability Context
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In 2006 the WHO held a conference to address the growing
evidence that wheelchairs distributed without user assessment,
prescription, fitting, and training can cause harm to individuals.
The conference charted a path toward more appropriate
wheelchair services. In 2008, with input from more than 25
wheelchair and rehabilitation experts, the WHO released
the Guidelines on the Provision of Manual Wheelchairs in Less
Resourced Settings, which sought to combat the risks associated
with wheelchair distribution and to address the challenges
of the health sector in providing appropriate care for people
with disabilities. The guidelines address manual wheelchair
design, production, supply, and service delivery for long-term
wheelchair users.
Given the complexity of this process, the WHO released three
complementary Wheelchair Service Training Packages (WSTPs)
to provide comprehensive training for health facilities and
professionals working to incorporate these guidelines. The three
training courses recommend health facilities receive capacity
building and technical support to provide quality wheelchair
services, as follows:
1. WSTP Basic covers minimum skills and knowledge required
of personnel in wheelchair service delivery.10
2. WSTP Intermediate focuses on children and users with
poor postural control who are unable to sit upright
independently.11
3. WSTP for Managers and Stakeholders informs wheelchair
service managers and stakeholders about the importance
of appropriate wheelchair provision.12
By following the WHO’s guidelines and undergoing WSTP
training, service providers can offer wheelchairs that are suited
to each user’s needs and context.
Technical experts work with service providers to build their
capacity to adhere to the WHO’s guidelines, but they have
faced significant challenges. Following the eight steps entails
significant organizational and procedural changes to move
from distribution models to delivery of full wheelchair services.
In many countries this also requires strengthening the health
system, advocating for change to disability laws, policies,
and budgets, and sensitizing communities about appropriate
wheelchair services. While organizations may have the technical
expertise to assist service providers in making the necessary
changes, they may not have the grassroots relationships to
effect change within the systems and structures that support
wheelchair provision locally. This has complicated the ability of
service providers to build capacity. These challenges are further
compounded when those most in need of wheelchairs are
accustomed to a distribution model of aid delivery and local and
national governments are unaware of the WHO’s guidelines or
are unable to implement them effectively.
1.2 The World Health Organization and Wheelchair Provision
A wheelchair is like a pair of glasses: It must be prescribed and fitted by a trained professional.
The WHO’s guidelines include eight steps to appropriate wheelchair provision:
1. Referral and appointment
2. Assessment
3. Prescription (selection)
4. Funding and ordering
5. Product (wheelchair) preparation
6. Fitting
7. User training
8. Maintenance, repairs, and follow-up
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The cost of high-quality wheelchairs is prohibitive for many
wheelchair users and service providers, leaving them vulnerable
to working with low-quality wheelchairs and prescribing the
wrong wheelchair simply because it is the only one available.
This can result in frequent repairs and replacements for
wheelchair users.
Whether due to a lack of understanding, resources, or capacity,
many organizations distribute wheelchairs without adhering to
the WHO’s guidelines. Many clients receive a basic model of
orthopedic wheelchair at wheelchair distribution events. These
events typically do not offer recipients appropriate fitting or
training, and follow-up with recipients is rare.
The mass distribution of wheelchairs has been shown to
disconnect wheelchair users from essential health structures
and to disempower individuals. When wheelchairs are
distributed without health sector involvement, education, or
inclusion activities and ongoing support, wheelchair users are
put at risk. Poorly fitted wheelchairs can cause or exacerbate a
number of negative health and social outcomes and can cause
life-threatening pressure sores and deformities. If a wheelchair
is improperly fitted, then mobility can be further hindered
and could have the unintended effect of exacerbating or
engendering isolation.
Receiving a wheelchair has the potential to be a life-changing
experience, leading to freedom of movement and participation
in the community for people with mobility limitations.13
However, wheelchairs must be distributed after a thorough
process that ensures proper anatomical fit and suitability for the
user’s environment; that is, the wheelchair must be appropriate
for the user. The provisioning of appropriate wheelchairs is the
goal of the WHO’s eight-step process outlined above.
Although pervasive in the developing world, wheelchair
distribution is not as effective as wheelchair provision. Those
who receive donated wheelchairs often abandon the
wheelchairs, are dissatisfied, and are less likely to achieve
a long-term solution. Research in India showed that 57 percent
of hand-rim-propelled wheelchairs were abandoned, while in
Nepal, 66 percent of distributed wheelchairs that had been
donated needed replacement after two years. In the sphere
of wheelchair services, something is not necessarily better than
nothing, especially if it means receiving a wheelchair through
an organization that uses a distribution approach. However,
research suggests that wheelchairs can improve health and
social inclusion outcomes for individuals when provided through
the health system in accordance with WHO standards.
Two significant and interrelated consequences can result or be
exacerbated by distributing wheelchairs without adhering to
the WHO’s guidelines:
1. Life-threatening secondary injuries
2. Social isolation
The complexity and interconnectedness of these two
consequences pose significant risks to people with disabilities,
pointing to the necessity for a holistic approach to wheelchair
services.
1.3 Current Practice: Wheelchair Distribution
Wheelchair provision is the process of equipping clients with wheelchairs in accordance with the eight steps found in the WHO’s Guidelines on the Provision of Manual Wheelchairs in Less Resourced Settings.
Wheelchair distribution is the act of giving out wheelchairs without adhering to the WHO’s guidelines.
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In developing countries, people with disabilities are among the
most vulnerable populations.14 A lack of education and access to
quality health services, coupled with high poverty rates, leaves
many people with disabilities willing to accept any assistive
device offered.15
Wheelchair users each have unique physical, environmental, and
functional needs; for this reason, one type of wheelchair will not
suit everyone. The wrong wheelchair can cause life-threatening
injuries. If a wheelchair is uncomfortable, it may be discarded or
given away to someone else that it was not adjusted to fit. If a
wheelchair is not suited to a user’s environment then it could
break easily, either necessitating expensive repairs for the user
or rendering the wheelchair unusable.16
Although many of these injuries are preventable, they are
difficult to treat, and, in many cases, can threaten the life of a
wheelchair user. The four most common secondary injuries
resulting from improperly fitted wheelchairs are:
1. Pressure sores
2. Spinal deformities
Please see Appendix 4 for further details.
In well-resourced countries, the average life expectancy
following a spinal cord injury is 38 years.18 In contrast, research
in Bangladesh found the median life expectancy following spinal
cord injury to be just 5.3 years, with 56 percent of people dying
within five years of their injury. Approximately 80 percent of
those included in the study died at home, and of those that died
at home, one third had pressure sores at the time of death.19
Among the four most common injuries, pressure sores rank as
one of the most persistent, progressive, and difficult to treat,
and significantly impact life expectancy.20 According to the
British Medical Journal, even in developed countries the
prevalence rates of pressure sores in patients with spinal injuries
are 20-30 percent 1-5 years after injury. One survey reported
that a quarter of patients with spinal injuries in the United
Kingdom had pressure damage.21
However, with an appropriate wheelchair, pressure sores can
be easily avoided. In a 1999 cost survey conducted at the
Ragama Rehabilitation Hospital in Sri Lanka, the estimated cost
of care for a pressure sore patient was $2,483 per year, a cost
that could be reduced through a pressure-relieving cushion
available locally for $15.22 If pressure sores develop, regular
follow-up services can identify and treat them before they
become life-threatening. Additionally, adjustments can be made
to the wheelchair, and wheelchair users and their caregivers can
be taught techniques for pressure relief, which can save lives.
The risks associated with the mass distribution of wheelchairs
without proper fitting and follow-up services are compounded
by the lack of access many people with disabilities face when
seeking healthcare, education, and social services. Poverty,
disability, and a lack of access to information are interrelated,
and those with more complex disabilities often lack the
financial resources to afford more advanced wheelchairs, or
the knowledge to understand the health consequences of ill-
fitting wheelchairs.23 In this context, secondary injuries often
go undiagnosed due to a lack of follow-up; this is compounded
by the environmental, attitudinal, and institutional barriers
that prevent wheelchair users from fully participating in their
communities. Therefore, those that are in the greatest need
of wheelchair services are often at the highest risk of the
pitfalls of a distribution approach. By distributing wheelchairs
without trained service providers, community development
organizations may be harming the very community members
they seek to assist.
1.4 Secondary Injuries
When a wheelchair is provided without fitting by a trained professional, the user can suffer serious secondary injuries.
3. Shoulder injuries
4. Contracture17
12
While it is important that service providers adhere to the
WHO’s wheelchair provision standards, the end goal should
be to improve the quality of life for wheelchair users, allowing
them to contribute to their community and live a full life in
an inclusive community. Institutional barriers, stigma, shame,
and a lack of wheelchair-accessible public spaces are significant
obstacles for people with disabilities. Combined, these factors
can contribute to social isolation.
In developing countries, people with disabilities and their
families are more likely to be economically and socially
disadvantaged. The World Report on Disability states that
disability can lead to weakened social and economic outcomes
given the disproportionately negative impact on education,
employment income, and increased expenditure. The UNCRPD
stipulates the importance of improving access to physical
environments (including buildings), transportation (including
roads), information and communication technology, and public
facilities and services. However, even once barriers to these
resources have been removed, negative attitudes, laws, and
social exclusion are still significant barriers for people with
disabilities. To overcome the negative attitudes and stigma
surrounding disability, community education and raising
awareness are necessary.
Even with appropriate wheelchair provision, wheelchair users
can remain isolated. Without access to employment and savings
opportunities, wheelchair users may not be able to pay for the
repair and maintenance of their wheelchairs. In addition, the
social stigma faced by people with disabilities can leave them
feeling disempowered and unwanted by their communities,
without the voice or knowledge to advocate for their rights.
Government institutions often do not meet the needs of people
with disabilities, and laws and policies frequently do not take
into account the obstacles that they face in the community.
These factors can leave wheelchair users, even those who
have access to high-quality wheelchair services, unable to fully
participate in community life.
The WHO’s eight steps of
wheelchair provision cannot
be achieved in isolation.
Community development
organizations have the
relationships and trust to
challenge negative attitudes,
engage local institutions, and
help build communities that
are inclusive of people with
disabilities. These assets are
as important as technical
expertise in ensuring that
wheelchair users have
appropriate wheelchairs and
are able to take full advantage
of the opportunities that
their wheelchairs provide.
1.5 Social Isolation
It’s not only about the wheelchair.
New wheelchairs are great, but they offer little relief if wheelchair users cannot or do not want to use them in their communities.
Credit: Motivation Charitable Trust
individuals
family
community
country
global
13
Providing the right wheelchair, in the right way, at
the right time has the capacity to change a person’s
life forever. This is just the start … to really put the
wheels in motion, people with disabilities also need
training and support to be healthy, confident, and
included in society. And they’re not the only ones to
benefit: families, communities, even economies feel
the positive change.†
†Motivation Charitable Trust. (2015). Motivation, Freedom through mobility: http://www.motivation.org.uk/.
14
Historically, World Vision has distributed wheelchairs
without ensuring adherence to the WHO’s eight steps, but
this is changing. We are altering our approach as we learn
from past projects, acknowledging the risks associated with
delivering wheelchairs without adhering to global standards,
and gaining an appreciation for the positive potential of this
work. World Vision is moving toward a holistic model,
fostering partnerships with wheelchair experts, DPOs, and
health structures that are needed to promote the inclusion
of people with disabilities.
The strength of community development organizations
such as World Vision is fostering trust and openness within
communities. This has led to the development of strong social
service provider networks that can be leveraged to improve
wheelchair services. World Vision recognizes that it will be
necessary to adapt and change our approach to mitigate the
negative outcomes of wheelchair distribution and deliver better
health outcomes for people with disabilities.
For community development organizations to be effective
in wheelchair provision, they must recognize the difference
between being a disability organization and being a disability-
inclusive organization. While most community development
organizations are not disability-focused and do not have the
clinical capacity to provide appropriate wheelchair services
themselves, wheelchair programming presents an opportunity
for community development organizations to become more
disability-inclusive. With a clear mandate from the UNCRPD,
the UN Sustainable Development Goals, and guidelines from
the WHO, and an increased interest in disability inclusion
among donors, the way forward is clear: there is an urgent
need to align wheelchair programming with international best
practices, and community development organizations have a
role to play.
PART II: WORLD VISION AND WHEELCHAIR SERVICES
2.1 World Vision’s New Thinking: Holistic Wheelchair Services
15
At present, there are multiple approaches to providing
wheelchair services, which has led to confusion and varied
interpretations of the role that community development
organizations should play. This research found that four key
pillars are critical to providing holistic wheelchair services.
When each of these four pillars is present, wheelchair users
may experience better outcomes. They not only receive
appropriate wheelchairs but also are connected to their
community’s health structures, can access support services,
are included in their communities more frequently, and have
access to more opportunities.
EDUCATION There is a lack of understanding about the
risks associated with wheelchair distribution, and an absence
of education around disability inclusion. This research found
that, in some instances, wheelchair services are not linked to
other programs; however, where this link exists, increased
disability inclusion activities are also present. This represents an
opportunity for community development organizations to use
existing structures to provide education and training to staff and
members of the community, and influence attitudinal change.
COLLABORATION The findings show that partnerships
are challenging and not always culturally ingrained within
organizations, although significant synergies were acknowledged
by participants. Community development organizations need
technical partners to help ensure an appropriate standard
of care and to work with health facilities to provide training,
mentorship, and organizational capacity building in wheelchair
provision. Technical partners need the support of community
development organizations to reach the most isolated people in
rural communities. Collaboration is key.
FACILITATION The creation of disability-inclusive
environments for wheelchair users is an essential “next step”
toward holistic, user-centered wheelchair services and should
be the central role of community development organizations.
This research found that receiving an appropriate wheelchair
has been a catalyst for wheelchair users feeling empowered
and included in community activities; however, this process
has often occurred on an ad-hoc basis. Findings across several
countries suggest that when disability inclusion is intentionally
mainstreamed into community activities, distinct from and
alongside wheelchair fitting, it can create opportunities for
communities and people with disabilities.
ADVOCACY Leveraging local advocacy networks and
collaborating with partners to advocate for national change
further supports the sustainability of holistic wheelchair services.
Community development organizations can use their strengths
and relationships, combined with technical expertise from
partners, to contribute informed input to national conversations
on people with disabilities.
2.2 Research Findings
This research found that the role of community development organizations is to educate communities, facilitate inclusive environments, collaborate with technical partners, and advocate for attitudinal change and improved policies for people with disabilities.
Appropriate wheelchairs + inclusive communities = holistic wheelchair services
16
Providing holistic wheelchair services requires a shift from
the distribution model of wheelchair services toward a
user-centered, rights-based approach, based on appropriate
wheelchair fitting (Track 1: Wheelchair Provision) and the
provision of disability inclusion support programming
(Track 2: Disability Inclusion). Together, this approach is
known as 8 Steps+ (see Figure 1).
In Track 1: Wheelchair Provision, community development
organizations support qualified service providers to deliver
appropriate wheelchairs, in accordance with the WHO’s
eight steps of wheelchair provision. To facilitate this process,
comprehensive education and training of staff and communities
is needed. Specifically, community development organizations
should educate the community about the dangers of poorly
fitted wheelchairs; facilitate linkages between service providers,
communities, and stakeholders; and develop a network
of community members to support the empowerment of
wheelchair users, manage expectations, and conduct referral
and follow-up. These steps will not only help people with
disabilities and community stakeholders understand the
importance of appropriate wheelchairs but also attract
government support to the initiative.
Wheelchairs are a small part of the overall picture—
wheelchair users need to live in environments that are
physically and socially accessible. More importantly, they need
to feel equal. To be successful, communities and people with
disabilities need to work together and see the mutual benefit
to their partnership. Community development organizations
can dramatically improve the nature of wheelchair services
by challenging perceptions of disability, fostering greater
understanding and empathy, and building inclusive communities
in the context of broader health, disability, and community-
based programming.
In Track 2: Disability Inclusion, community development
organizations must facilitate a disability-inclusive environment
for wheelchair users. This mainstreaming of disability inclusion
can be achieved through community-level awareness raising
and advocacy, community education on disability rights and
inclusion, and support for the work of DPOs. In challenging
negative attitudes, creating accessible opportunities, and
empowering wheelchair users, communities excel, thrive, and
celebrate their diversity. When combined with national-level
advocacy, these actions have the potential for long-term impact.
2.3 Recommendation: The 8 Steps+ Approach
Figure 1: The 8 Steps+. The left side shows the WHO’s eight steps of wheelchair provision (Track 1: Wheelchair Provision); the right side shows the value added by community development organizations—disability inclusion programming, a.k.a. the “plus” (Track 2: Disability Inclusion).
REFE
RRAL
ASSESSM
ENT
PRESCRIPTION
FUNDING & ORDERING
PRODUCT PREP
FITTINGUSER
TRAINING
FOLLOW-UP
Track 1:
THE 8 STEPSTrack 2:
THE PLUS
17
Changing to a holistic approach to wheelchair services allows
World Vision to follow the framework set out in the UNCRPD.
This marks a significant shift to a rights-based approach to
working with people with disabilities, an approach that views
people with disabilities as agents of change who have a voice
in decision-making and recognizes that they should be active
members of society. The 8 Steps+ approach to wheelchair
provision has a number of important advantages in this regard.
1. OFFERS A USER-CENTERED APPROACH
Putting the wheelchair user at the core of the approach
to wheelchair provision gives them the opportunity to
participate and make decisions about their own care.
Empowering wheelchair users throughout the process gives
the project a much higher chance of success and creates a
greater likelihood that the wheelchair will remain in use
long term. Additionally, it allows World Vision to meet
the needs of people with disabilities in a way that is both
inclusive and sustainable.
2. CREATES INCLUSIVE COMMUNITIES
The 8 Steps+ approach goes beyond just providing a quality
wheelchair. By leveraging the strengths of community
development organizations, this approach builds communities
that are inclusive of people with disabilities. Understanding
that having an appropriate assistive device is necessary,
but not sufficient, for inclusion, community development
organizations can use this model to ensure that their own
programming is disability-inclusive and can raise awareness of
disability within communities and local governments.
3. ENSURES PEOPLE WITH DISABILITIES ARE CONNECTED TO THE HEALTH SYSTEM
Ensuring that trained professionals prescribe and fit
wheelchairs at a local clinic will mean that wheelchair
provision aligns with the local health system. People with
disabilities are more likely to have other health problems
that will need attention throughout their life. It is therefore
critical that children, adults, and families of people with
disabilities are connected to the local and national health
systems and that these facilities are aware of them in order
to offer assistance and support.
4. MULTIPLIES THE BENEFITS OF HIGH-QUALITY WHEELCHAIR SERVICES
Built on partnerships between community-based
organizations and trained service providers, the 8 Steps+
approach can ensure not only quality wheelchair provision
but also long-term follow-up and community inclusion.
Through community education and engagement, challenges
to appropriate wheelchair provision, such as difficulty
tracking clients for follow-up and lack of understanding
among people with disabilities and the community, can be
addressed. Each organization in these partnerships leverages
their strengths to multiply the benefits to wheelchair users
and their families.
5. CATALYZES DISABILITY INCLUSION
Wheelchair provision has proven to be a catalyst for change
within communities. Wheelchairs promote acceptance,
challenge negative attitudes, and have positive effects when
coupled with the inclusion of people with disabilities into
community activities. Increased mobility improves and
expands disability inclusion results.
6. IS SUPPORTED BY GLOBAL RECOGNITION
Support for a user-centered, twin-track approach is
recognized globally. The UN Convention on the Rights of
People with Disabilities discusses appropriate wheelchair
provision, and the new UN Sustainable Development Goals
frequently mention disability inclusion. In addition, many
governments and funding bodies, such as UNICEF, DFID,
and DFAT, are actively seeking partnerships in disability.
2.4 Advantages of the 8 Steps+ Approach
A holistic approach to wheelchair services has
the potential to be a catalytic force for change.
18
Community development organizations are well positioned
to deliver holistic wheelchair services based on the 8 Steps+.
This research identifies four key pillars for community
development organizations looking to get started. The pillars,
their importance, and key actions for implementation are
shown in Figure 2, with a fuller discussion of each in the
section that follows, including case studies, sidebars, and
illustrative examples. Please also reference Appendix 3:
The 8 Steps+ and Community Development Organizations
for more information.
PART II1: GETTING STARTED—THE FOUR PILLARS
WHY? Build understanding of disability inclusion and appropriate wheelchair provision
HOW?
1. Dedicate human resources
2. Provide staff with education and training
3. Empower wheelchair users
4. Sensitize the community
FIGURE 2: The four pillars that support the 8 Steps+ approach. The “why” section communicates the importance of the pillar to the overall process; the “how” section presents key actions to begin implementation.
HOW?
1. Create policy and guidelines
2. Leverage strengths to facilitate the eight steps (Track 1)
3. Prioritize disability inclusion to facilitate the “plus” (Track 2)
HOW?
1. Collaborate with technical partners
2. Collaborate with DPOs
3. Collaborate with international partners
HOW?
1. Focus on the rights of people with disabilities
2. Advocate for national policy changes and regulation
3. Create sustainable global solutions
WHY? Challenge community
perceptions through
adapting programming
WHY? Enhance strength
through technical and
local partnerships
WHY? Leverage local and
national advocacy for
sustainable solutions
EDUCATION FACILITATION COLLABORATION ADVOCACY
19
Education is critical to ensuring that partners fully
understand the components of holistic wheelchair services.
Organization staff, community members, and representatives
of business, government, DPOs, and service providers must be
educated about the WHO’s eight steps, disability inclusion,
and the 8 Steps+ approach. The three main partners—
community development organizations, technical specialists,
and service providers—should work together to educate
stakeholders about the importance of a twin-track approach
to wheelchair provision based on the WHO’s eight steps
(Track 1) and disability inclusion (Track 2). Education requires
significant collaboration with technical partners and input from
service providers and wheelchair users at the start of projects.
If community development organizations work to educate
staff and communities, technical experts can facilitate capacity
building for wheelchair service providers concurrently.
A significant gap exists in knowledge about disability and
social inclusion, but there is a willingness and desire to learn.
Disability as a crosscutting theme requires technical support
and education within organizations across the development
sector. Addressing this gap can be achieved through prioritizing
disability within policy and strategy, as well as dedicating,
equipping, and supporting staff.
1. DEDICATE HUMAN RESOURCES
Education about disability and support for wheelchair
provision and disability inclusion interventions need to be
available at all levels of the organization. From proposal
design to implementation and monitoring and evaluation,
staff should be encouraged to incorporate disability inclusion.
For successful disability mainstreaming, organizations need
leadership support and technical expertise.
Within each country office, there should be a staff
member with the knowledge of how to facilitate inclusive
environments. This staff member should support their
office on mainstreaming disability in the design and
implementation of projects through consultation with
DPOs and technical experts.
“ I wanted to tell you about our education. A lot of people often think about construction for people in wheelchairs … ramps and taps and things, but we have also started to include some disabled people as community volunteers, too.
At first the community didn’t think this was possible, but now they realize people with disabilities can contribute, too.”
—World Vision program manager, Malawi
KEY ACTIONS1. Dedicate human resources
2. Provide staff with education and training
3. Empower wheelchair users
4. Sensitize the community
3.1 Education
20
2. PROVIDE STAFF WITH EDUCATION
AND TRAINING
While the WHO’s Wheelchair Service Training Package
(WSTP) provides a clear curriculum for wheelchair
service providers, limited guidance exists for community
development organizations about holistic wheelchair
services. World Vision staff in India and Nicaragua have
participated in the WSTP training for managers, which has
given them an understanding of their role in facilitating the
eight steps. To bridge the gap between WSTP training and
broad disability awareness, staff training and education
across all parts of the organization is critical.
Staff within community development organizations should
have a thorough understanding of the WHO’s Guidelines on
the Provision of Manual Wheelchairs in Less Resourced Settings
and disability inclusion principles.
The staff members of community development organizations
dedicated to inclusion should work closely with technical
partners and DPOs on staff training. This allows technical
experts to articulate the risks inherent in a wheelchair
distribution approach and sensitize staff to the importance
of working through trained service providers. Disability
inclusion training can be strengthened by working with
members of the disability community through DPOs. This
incorporates the perspectives of people with disabilities
and bridges gaps that may not have been recognized
by community development organizations in the past.
Cascading this training throughout organizational structures
is essential to building an understanding of disability inclusion
within communities.
Several tools exist for further education on disability
and disability inclusion within community development
organizations. The two-part training curriculum listed
here was developed by World Vision.
1. Travelling Together: A disability awareness training
manual that focuses on approaches to disability,
confronting barriers, and moving past excuses to
effect change within organizations.
http://www.wvi.org/disability-inclusion/publication/travelling-together
2. On the Road to Disability Inclusion: A supplement to the
Travelling Together curriculum that provides practical
checklists for disability inclusion throughout a program
life cycle.
https://www.worldvision.org/our-work/disability-inclusion
3. EMPOWER WHEELCHAIR USERS
The education of wheelchair users is an essential step
toward providing holistic wheelchair services. The shift from
a distribution model to a provision model can be confusing
for some. Wheelchair users may not understand why the
fitting process requires multiple appointments or why they
were prescribed a particular model of wheelchair. Educating
wheelchair users about the benefits of holistic services can
60% of field and project staff interviewed stated that education about disability at the start of projects, both nationally and within communities, would enable stronger linkages with service providers and contribute to greater disability inclusion in the future.
“We didn’t know what we didn’t know.” —World Vision staff member, Somalia
21
build client support for the process and encourage individuals
to advocate for their right to an appropriate wheelchair.
This education should happen within the community rather
than at the service center to provide wheelchair users
with the knowledge necessary to hold service providers
accountable for adhering to the WHO’s guidelines.
In Nicaragua, World Vision established community advocacy
groups to hold local governments accountable for disability
inclusion in their communities. As part of the training on
the rights and entitlements of people with disabilities in
Nicaragua, UCP Wheels for Humanity sensitized group
members on appropriate wheelchair provision. Although
some of the wheelchair users in these groups had been
active in advocacy for many years, they never knew about
appropriate wheelchair provision. As a result of this
sensitization they were empowered to seek full wheelchair
services and thereby mitigate some of the secondary injuries
they had experienced because of ill-fitting wheelchairs.
Years of stigma and negative attitudes mean that educating
people with disabilities about their rights and capacity
to contribute to their communities is essential. Training
wheelchair users how to navigate difficult situations,
challenge misconceptions, and participate in community
events are all vital steps toward disability inclusion. Where
possible, wheelchair-user peer-training courses should be
developed in collaboration with DPOs, technical partners,
and community development organizations. The participants
of these peer-training courses can then be engaged to raise
awareness and empower other wheelchair users in their
communities. Presently, peer-group training courses are
offered through the 8 Steps+ approach in Romania and
Kenya, with trainees learning advanced wheelchair handling
skills, confidence-building strategies, and ways to become
more active in their communities. In Kenya, this training has
led to wheelchair users becoming referral actors and peer
mentors, helping other wheelchair users participate in their
communities and break down barriers.
4. SENSITIZE THE COMMUNITY
Working with the community to challenge negative beliefs,
attitudes, and behaviors is essential for disability inclusion, and
developing an understanding of the importance of appropriate
wheelchair provision is key to establishing sustainable referral
and support networks for wheelchair users.
Community development organizations should collaborate
with DPOs to create and deliver contextually relevant
disability inclusion training curricula targeted to community
members and stakeholders, including local government,
community leaders, service providers, and local businesses.
This training should take advantage of the WSTP Managers
and Stakeholders curriculum to ensure that all stakeholders
understand the 8 Steps+ approach to holistic wheelchair
services. Combining disability inclusion and wheelchair
provision sensitization will help address attitudinal and
physical barriers for wheelchair users as well as encourage
their integration within the health system.
As well as providing general sensitization on disability
inclusion and the importance of appropriate wheelchair
provision, community development organizations can
directly support wheelchair services by training community
members on referral of and follow-up with wheelchair
clients. This training should ensure that community members
can identify and screen individuals for wheelchair services,
manage their expectations, and connect them to qualified
services. Community members should be trained to support
wheelchair users once they receive their product. With
appropriate training, community members can help identify
needs for clinical follow-up and repair that may go unnoticed
without targeted support.
In countries implementing the 8 Steps+ approach,
World Vision has mobilized networks of community
members and volunteer health workers as referral and
follow-up actors. These groups include representatives
from DPOs, local government, healthcare providers,
teachers, and faith leaders. In El Salvador, social workers
from the Ministry of Health have been mobilized to provide
referral and follow-up support to wheelchair clients—a
step toward sustainability.
22
Case Study: Education
Disability is a club anyone can join at any time.
Jane Kamrou in Kenya had a poorly fitted wheelchair and was excluded from her community until she received a well-fitted wheelchair that has allowed her to finish university, change attitudes in her community, and dream about becoming a member of parliament!
Jane became disabled in a traffic accident when she was a teenager. When leaving the hospital, she was given a wheelchair. It was heavy and cumbersome and she couldn’t push it herself. Not only that, but it was uncomfortable and quickly broke. As a result, Jane felt excluded from her community for a number of years.
Jane received a new, high-quality wheelchair as part of the ACCESS project—a partnership between World Vision, Motivation Kenya, and the Association of the Physically Disabled in Kenya—which has made her more independent and confident. She says getting her new wheelchair was like receiving a “brand-new pair of stilettos.” Today she is happy and self-assured. She thinks
that people feel comfortable approaching and talking to her because of the change in her attitude. Jane has also recently attended a peer-group training organized by Motivation. At this training, new wheelchair users are taught by mentors how they can be empowered and become strong community members, as well as how to challenge negative attitudes about disability.
Since receiving her wheelchair, Jane has taken up dancing, gone to university, and, most notably, made plans to run for a seat in parliament in the next election. The Kenyan government has a quota system requiring that at least five people with disabilities serve in government at any time, so Jane has a good chance of being elected.
Without an appropriate wheelchair coupled with community education and inclusion, Jane would have struggled to achieve these feats.
As Jane says: “Change begins with you.”
“ Now that I am confident in my new wheelchair, I am happy. Because I am happy, people feel like they can approach me directly and discuss disability and learn about my difficulties.”
23
The primary role of community development organizations
in wheelchair services is to facilitate inclusive, accepting, and
welcoming communities for people with disabilities. To do
this, organizations need to remove obstacles to inclusion by
leveraging existing programs, relationships, and strengths. In
order for holistic wheelchair services to become a reality in
global programs, international development organizations
must prioritize disability inclusion, ensuring that it is a strategic
objective and is supported through funding.
1. IMPLEMENT POLICIES AND GUIDELINES
Given the complexity, technical nature, and risks associated
with wheelchair programming, organizations should put
policies and guidelines in place to give clear instructions
to teams implementing wheelchair programs. In line with
the principle of “do no harm,” community development
organizations should ensure measures are taken to mitigate
the health risks attached to providing wheelchairs in less-
resourced settings.
One recommendation is to develop, adopt, and implement
a comprehensive wheelchair programming policy that
requires all wheelchairs donated through the community
development organization to be provided to end beneficiaries
through skilled service providers that make every effort to
comply with the WHO’s guidelines on wheelchair provision.
2. LEVERAGE STRENGTHS TO FACILITATE
THE EIGHT STEPS (Track 1: Wheelchair Provision)
Community development organizations can leverage their
strengths and existing community structures to support
wheelchair provision through the WHO’s eight steps.
Referral and appointment. Using programs and structures
already functioning in the community, organizations can create
referral networks through the training of local health and social
workers. These actors may already work within communities
and have links to the health system or other structures that
may be in place through local programs, education committees,
health committees, and community monitors.
Outreach clinics. Once clients are referred, it can often be
difficult for them to reach centrally located services. In these
cases, service providers can operate outreach clinics to reach
the most remote individuals. Service providers bring all of
the equipment necessary for wheelchair provision and often
see many individuals in a short period of time. Outreach
clinics require a great deal of logistical legwork to secure the
right venue, provide food and water for staff and clients, and
guarantee that a sufficient number of clients will attend the
event. Community development organizations often have
the relationships and mechanisms in place to support these
outreach events.
“Our communities are stronger because of this wheelchair partnership.”—Community member, Kenya
KEY ACTIONS1. Implement policies and guidelines
2. Leverage strengths to facilitate the eight steps (Track 1)
3. Prioritize disability inclusion to facilitate the “plus” (Track 2)
3.2 Facilitation
24
In India, World Vision has supported outreach clinics by:
• Using community relationships to secure venues at low
or no cost
• Raising awareness about outreach events through
community forums
• Arranging the secure storage of wheelchairs by negotiating
with local government
• Facilitating meetings and communication between the
referral network, service providers, and the wheelchair
storage facility
In Kenya, the Outreach+ model combines traditional
wheelchair outreach services of assessment, fitting, and
user training with community inclusion activities under the
8 Steps+ approach. In one Outreach+ clinic, Ministry of
Education officials assessed children with disabilities who
require school placement. The National Council for Persons
with Disabilities used this platform to register new members,
while local peer-group trainers and artisans provided
psychosocial support to the children and minor repairs to
wheelchairs. World Vision not only supported outreach but
also leveraged existing community relationships to create a
platform for ensuring that beneficiaries have access to a
range of services for meaningful inclusion and participation
in community life.
Follow-up and inclusion. Engaging the network of referral
actors to conduct community follow-up closes the loop
on the wheelchair provision process. This creates a strong
support structure for new wheelchair users should they need
to return to the wheelchair service provider for adjustments.
In countries where 8 Steps+ is being implemented,
World Vision supports community networks to conduct
follow-up with wheelchair clients to ensure that their
wheelchairs remain in working order and are still
appropriate for the user. In addition, community actors hold
conversations with clients regarding their social activities
and suggest ways for wheelchair users to participate in the
community. Information is then fed back to the service
provider and World Vision to improve the program. For
example, in India, community follow-up identified several
wheelchair users who had similar repair needs. Upon further
analysis, it was determined that the damage was caused by
the improper assembly of wheelchairs. Through community
follow-up, the technical partner was able to identify the
problem and work with wheelchair service centers to
remedy it.
3. PRIORITIZE DISABILITY INCLUSION TO FACILITATE
THE “PLUS” (Track 2: Disability Inclusion)
Facilitating inclusive communities requires community
development organizations to prioritize disability inclusion
across all programs. This compels organizations to examine
their existing programs to ensure that they are accessible
to people with disabilities, while also addressing existing
bias within program design, monitoring, and evaluation;
implementation; and location and budget decisions. This
requires prioritizing disability inclusion and wheelchair
provision through strategy, training, human resourcing, and
funding. This can be addressed when designing new projects,
as well as by thinking critically about current projects and
making changes where necessary.
In Romania, after a Travelling Together training event for
area program staff, participants examined program logical
frameworks to identify how activities could be more
disability-inclusive. This led to an increased awareness of
the need for disability mainstreaming, and in 2016 local staff
began advocating to the national office to build disability
inclusion into the upcoming five-year strategy. Similarly,
World Vision India has prioritized and incorporated disability
into its national strategy.
25
Facilitating the “plus” to create inclusive and accepting
communities requires community development organizations
to become disability-inclusive in all their programs. Specific
ideas include:
ADVOCACY Adapt advocacy models to address barriers to
disability inclusion, advocating for the right to an appropriate
wheelchair as well as access to services and facilities for
community members with disabilities. In India, disability
inclusion has been incorporated into 134 community advocacy
groups across the country. In Romania, youth groups have
been advocating for independent living solutions for people
with disabilities.
ECONOMIC DEVELOPMENT Include wheelchair users in
village savings and loan associations (VSLAs) and other ongoing
income-generating activities in the community. Facilitating this
within existing programs challenges attitudes around disability
and offers financial empowerment to wheelchair users.
HEALTH Include wheelchair users as community referral and
follow-up actors, not only for wheelchair services but for other
health initiatives as well.
COMMUNITY MONITORING Initiate community monitoring
by wheelchair users. In Malawi, wheelchair users are now
becoming community volunteers and participating in program
monitoring and evaluations.
WATER, SANITATION, AND HYGIENE (WASH) Include
wheelchair users in the design of community WASH
infrastructure to ensure it meets their needs and to avoid
costly retrofitting. Incorporating wheelchair users into
community committees and groups surrounding such sector
interventions ensures the needs of wheelchair users are met
within the community.
EDUCATION Support equal educational opportunities for
children who use wheelchairs, and facilitate inclusive educational
environments through accessibility audits and the participation
of school officials in the creation and promotion of disability-
inclusive educational activities.
RESILIENCE AND LIVELIHOODS Provide training
opportunities for wheelchair users and equal participation
in ongoing agriculture and sustainable livelihoods projects.
For example, one agriculture program in Kenya has trained
145 people with disabilities in beekeeping in its first year.
PROGRAM DESIGN, MONITORING, AND EVALUATION
Include wheelchair users in the design of new programs,
including as participants in focus group discussions and as
informants during interviews. People with disabilities can
also serve as enumerators for data collection efforts.
Including People with Disabilities in Ongoing ProgramsIDEAS FOR ACTION
Over 90% of World Vision field staff working on 8 Steps+ projects in seven countries believe that the approach has caused other projects to become more disability-inclusive.
26
Case Study: Facilitation
Track 1: Making the eight steps possible in India
In remote rural areas of India, true partnership is necessary to facilitate the WHO’s eight steps of wheelchair provision. Two technical partners, Motivation India and World Vision India, have worked together with service providers and DPOs to ensure outreach clinics are well resourced and supported by communities.
At first the plan appeared simple: Motivation India would support local wheelchair provision through outreach clinics held in rural communities. World Vision would support this by referring and following up with clients who received wheelchairs.
However, things became more challenging when both partners realized what was necessary to provide a quality service. To facilitate the WHO’s eight steps via an outreach clinic, a number of things were required:
• Suitable locations with private appointment spaces, and necessary equipment
• Secure storage for wheelchairs at the location prior to the event
• Food and water for staff and service providers working long hours
• Assistance for clients traveling long distances, where the cost of transportation could be prohibitive
The logistics of these events were difficult to manage for wheelchair service providers without community connections. Yet with the support of World Vision,
the community, and the local government, the seemingly impossible became possible.
World Vision was
able to work with
local governments and hospitals to secure space for the outreach clinics. In one community, when no hospital was available, local families opened their homes so the outreach clinic could continue. Wheelchair storage was donated by local governments, and in one community a local business owner stored wheelchairs free of charge. Other community organizations and DPOs have provided space for wheelchair preparation and snacks and water for staff. It is only because of the commitment from the service providers, technical partners, community organizations, DPOs, local governments, World Vision, and community members themselves that these services could be successful in remote areas.
These services go beyond just providing mobility. They bring communities together, raise awareness of disability inclusion, and open the door for people with disabilities to fully participate in their communities. The success isn’t the individual getting a new wheelchair; the success is that the community comes together around people with disabilities. The success is what comes next for all those involved in this seemingly impossible endeavor.
27
Case Study: Facilitation
Track 2: The “plus” of inclusive communities in Romania
In Romania, the 8 Steps+ approach has led to greater inclusion for the community, education for children’s groups, and tangible progress for advocacy groups and wheelchair users like Master Gatis. These groups and individuals have worked together to come up with innovative ideas to include new wheelchair users in ongoing activities.
In the Romanian countryside, the elderly are the group that experiences the greatest mobility limitations and social exclusion. They find it challenging to leave their homes, are unknown by their communities, and lack access to support structures. This means that many elderly wheelchair users do not view themselves as part of their community and feel forgotten. In Negrești, Master Gatis was one of only two wheelchair users to participate in community groups. Without a budget for specific activities, the group looked to World Vision Romania for assistance in addressing problems in their community.
Community advocacy groups were already operating locally. After a consultation, these groups decided to begin an outreach program aiming to educate young people about disability and support disability inclusion in the community.
The group enlisted children, youth, and other community members to visit people with disabilities in their homes. World Vision invited Boy Scout groups in Negrești to help Master Gatis with chores around his house. At Christmas, children’s caroling groups visited people’s homes to sing, while simultaneously learning about the benefits of an inclusive community.
These events culminated with the annual Sons of the Village celebration in rural Cămărașu. With an inclusive and accepting approach, the community groups arranged for people with disabilities, who are often unable to leave home, to participate in the events. The mayor welcomed everyone and talked publicly during the opening ceremony about the need to integrate people with disabilities into the community.
There have been noteworthy results. Now that Master Gatis is better connected to his community, he is committed to giving back. As a former apiarist and farmer, he has volunteered with World Vision to share his experience in beekeeping with the children of the community. Children who come to the class learn not only about bees but also about disability.
The use of existing structures has enabled the development of disability inclusion in Romania in a way that is both locally relevant and sustainable.
28
For the successful implementation of the 8 Steps+ approach,
collaboration with multiple partners is crucial. Respondents in
this research listed 21 types of stakeholders—local, national,
and international—that are accountable for the success of
wheelchair provision programs. Community development
organizations are well placed to link service providers and
technical experts to these stakeholders, but strong coordination
is necessary.
Through partnership, organizations can leverage their
strengths for broader impact. However, this requires partners
to think critically about their strengths and weaknesses. The
most successful projects in this research were those that had
frequent and open communication with partners. Significant
challenges can arise when working with multiple partners in
different locations, making a clear delineation of roles and
responsibilities at the beginning of the project vital. The
8 Steps+ approach has evolved from successes in projects
where organizations have established relationships with local,
national, and international partners based on shared values
and open communication channels.
1. COLLABORATE WITH TECHNICAL PARTNERS
Health system capacity. One of the most important parts
of the 8 Steps+ approach is building the capacity of
local wheelchair service providers. Ensuring high-quality
wheelchair services within local health facilities requires
significant training of individuals as well as organizational
capacity building around adhering to the WHO’s guidelines.
This training, mentorship, and ongoing support should be
provided through agreements with technical partners that
specialize in wheelchair provision.
One key barrier faced by wheelchair service providers is the
lack of WHO WSTP-trained personnel; another is the lack
of processes and procedures that foster the implementation
of the full eight steps. While it is the role of technical partners
to build this capacity, the time and resources needed to
address these two factors can sometimes be viewed as
problematic by community development organizations. A
collaborative approach that provides both education and
funding is needed. Without recognition of their currently
low level of capacity—and without joint program initiatives
to address it—low-quality services will hinder success
for wheelchair service providers. This will have a direct
“The gathering of forces is the most important part of this change. Together we are strong.”
“This project has been a catalyst for a long-term, sustainable partnership and appropriate wheelchair provision in communities.”
—World Vision staff member, Malawi
—World Vision staff member, India
KEY ACTIONS1. Collaborate with technical partners
2. Collaborate with DPOs
3. Collaborate with international partners
3.3 Collaboration
29
impact on the ability of people with disabilities to receive
appropriate wheelchairs and be included in the community.
Product range. A key consideration for community
development organizations working in wheelchair provision
is ensuring the continuous availability of a range of high-
quality wheelchairs, both through importation and local
production. To cater to a range of disabilities and support
high-quality services by wheelchair service providers,
community development organizations need access to
different types of wheelchairs. To obtain an appropriate
range of products, community development
organizations can:
1. Work with technical experts to procure a range of
high-quality, contextually appropriate wheelchairs using
project funds
2. Work with donors to provide mixed donations of
different types of wheelchairs
3. Work with technical experts to build capacity of local
markets to manufacture high-quality wheelchairs
4. Advocate to government for a range of wheelchairs and
long-term national solutions
The ACCESS project in Kenya has sourced a range of
wheelchairs through four different channels. The international
procurement of high-quality wheelchairs is made possible
by USAID funding. Locally produced wheelchairs are
manufactured by and procured from a trained local service
provider. Two international wheelchair donors support
the project by shipping wheelchairs at no cost. This mix
of funding streams results in a continuous flow of high-
quality wheelchairs, spurs local production, and introduces
wheelchair donors to the 8 Steps+ approach.
Recognizing the challenges inherent in procuring a range
of products, the United States Agency for International
Development has supported the Consolidating Logistics
for Assistive Technology, Supply, and Provision (CLASP)
project, a resource for organizations to acquire a range of
wheelchairs that meet ISO standards and are designed
for less-resourced settings. Information is available at
www.clasphub.org.
2. COLLABORATE WITH DPOs
Community development organizations must collaborate
with local and national DPOs. Using local health and social
workers, community leaders, and existing structures such as
DPOs to connect families directly with clinics takes longer to
facilitate but can ensure the long-term health and well-being
of wheelchair users and their families. In India, World Vision
is working with over 130 local DPOs to build capacity for
advocacy and citizen engagement.
Community development organizations should also
partner with DPOs to strengthen their own understanding
of disability. In Nicaragua, World Vision has partnered with
a local DPO to help inform its approach and gain critical
insights into current institutional barriers faced by people
with disabilities. This has resulted in joint trainings that are
contextually relevant and informed by the input of people
with disabilities. In addition to disability inclusion training,
DPOs can support community development organizations
in baseline needs assessments with the disability community,
conduct or support accessibility audits, and refer highly
qualified people with disabilities to community development
organizations as potential staff members. Working with
DPOs is essential in fulfilling the development community’s
commitment to the disability watchwords: “nothing about
us without us.”
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3. COLLABORATE WITH INTERNATIONAL PARTNERS
With increased attention to both appropriate wheelchair
provision and disability inclusion, community development
organizations have a range of international partners
to tap for support in wheelchair programming. The
International Society of Wheelchair Professionals (ISWP)
is an organization dedicated to promoting the WHO’s
guidelines on wheelchair provision in less-resourced settings,
promoting training and research activities, improving
wheelchair design and manufacturing, and coordinating
services. They offer an online assessment of knowledge
about wheelchair provision. Members can access information
about upcoming training opportunities and the status of
wheelchair provision in their country. Information is available
at http://www.wheelchairnet.org/.
Community development organizations can take advantage
of the increased interest in disability inclusion to work
with large international donors to attract project funding
for specific inclusion campaigns. International donors such
as USAID, UNICEF, DFID, and DFAT offer partnership
opportunities in disability inclusion. With large-scale public-
private networks such as the Global Action on Disability
Group emerging in 2015, local development organizations
have more opportunities to build global partnerships and
attract international funding.
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Case Study: Collaboration
ACCESS in Nicaragua: the socios
In Nicaragua, the ACCESS partnership is made up of five organizations: a community development organization, a technical expert organization, a local NGO, a government ministry, and a local DPO. These organizations include World Vision, United Cerebral Palsy Wheels for Humanity (UCP Wheels), Future of Nicaragua, The Ministry of Health (MINSA), and Los Pipitos. Together, they collaborate to deliver high-quality wheelchair provision and disability inclusion in a country where wheelchair distribution models had been the norm. Never before had organizations worked cross-functionally to deliver services, raise awareness, and influence stakeholders on wheelchair provision.
The partnership seemed simple. World Vision would assist communities to identify clients who needed wheelchairs. UCP Wheels would train and support service providers at MINSA, Los Pipitos, and Future of Nicaragua to conduct appropriate assessments and prescribe wheelchairs, which would be ordered and assembled from a newly formed regional wheelchair hub at Future of Nicaragua. Service providers would then conduct fitting and user training, with World Vision following up with disability inclusion activities. Completing all eight steps would require each organization to do their part well.
The biggest hurdle was identifying where one partner’s responsibility started and another partner’s ended. Referral networks needed direction not only from World Vision but also UCP Wheels, who could better explain the eight-step provision process. Service providers looked for support not only from UCP Wheels, the technical experts in wheelchair provision, but also to Future of Nicaragua, who advised them on their wheelchair prescriptions when ordering from the regional hub, and World Vision, who assisted with the monitoring database.
To manage these blurring responsibilities, the partners— or socios in Spanish—had to trust each other. The technical
partner had to trust the hub to provide correct guidance on wheelchair prescriptions. The hub had to trust World Vision to provide correct advice to service providers about how to enter order information into the monitoring database. All partners had to trust that when any of the socios visited communities they would deliver a consistent message about the need for high-quality wheelchair services.
While building trust was a long process, now the team understands each organization’s role, trusting each other to do and say not only what is best for the project, but what is best to promote the 8 Steps+ model of wheelchair provision in Nicaragua. This trust was built over time through continual communication and collaboration. Now, when asked about the project, staff members of any organization will say, “I need to consult the socios,” demonstrating their commitment to working as a team.
Through this collaboration, the socios have succeeded in advocating to the National Autonomous University of Nicaragua (UNAN) to include wheelchair service training in the physiotherapy curriculum. Because UNAN is the only Nicaraguan university training physiotherapists, this allows every new physiotherapist in Nicaragua to be prepared to conduct the full eight steps of wheelchair provision. UNAN staff participated in wheelchair provision training for the first time in 2016 and are currently developing a plan for integrating the training into the physiotherapy curriculum.
The lasting legacy of the ACCESS project in Nicaragua is not just the provision of wheelchairs but the understanding that it takes community development organizations, wheelchair experts, and service providers working together to build a sustainable system of wheelchair provision and disability inclusion. Collaboration is the heart of the 8 Steps+ approach—just ask the socios.
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Working collaboratively with partners toward the
implementation of the 8 Steps+ approach gives community
development organizations the strength to advocate for
change. Community development organizations can leverage
their national and international networks, as well as those of
their partners, to facilitate long-term change at all levels of
government and society.
1. FOCUS ON THE RIGHTS OF PEOPLE
WITH DISABILITIES
When people with mobility limitations receive appropriate
wheelchairs, the environmental barriers they face become
more evident. Supplemented by community education and
outreach, the visible impacts of inaccessibility in a community
can be used as a springboard for improving the rights of
people with disabilities through advocacy.
As a result of increased awareness and education about
disability through World Vision wheelchair programming,
World Vision advocacy groups have begun to tackle a
variety of disability rights issues. In Romania, municipalities
have begun to add wheelchair ramps and make public
spaces accessible for wheelchair users in their communities.
In Nicaragua and El Salvador, World Vision advocacy
groups have begun educating teachers and administrators
on disability-inclusive education and anti-bullying. In India,
advocacy groups work with local governments to help
people with disabilities access basic government services
such as disability certification and pensions.
2. ADVOCATE FOR NATIONAL POLICY CHANGES
AND REGULATIONS
National policy. The reputation, size, and strength of
community development organizations such as World Vision
can be leveraged to achieve national change when combined
with the expertise of technical partners. Community
development organizations can use their resources and
neutrality to help inform national governments of policy
changes that will lead to sustainable solutions for people
with disabilities based on an informed and collaborative
foundation. Incorporating the WHO’s eight steps and quality
standards into policies that can be legislated locally advocates
for a higher level of care for people in need of wheelchairs,
creates opportunities for funding, and strengthens systems
at all levels.
“ Expecting the same stakeholders that are causing the problems to be the catalyst for change is hard. Incredible when it works, but hard nonetheless.”
—Motivation Charitable Trust senior staff member, UK
KEY ACTIONS1. Focus on the rights of people with disabilities
2. Advocate for national policy changes and regulations
3. Create global solutions
3.4 Advocacy
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The implementation of the 8 Steps+ approach in India,
Romania, and Kenya has resulted in policy shifts that
include the incorporation of wheelchair provision training
into university health curricula, increased access to quality
assistive devices, and improved regulations surrounding
wheelchair services. In Romania, policy changes have been
initiated that would give users access to new wheelchairs
every three years, rather than every five.
Local health systems. Strengthening both community and
health structures means that community groups and local
governments must both advance inclusion. Working with
technical partners that specialize in building health system
capacity introduces the WHO’s guidelines to local health
facilities. This is a powerful tool to strengthen health systems
for long-term sustainability, especially when combined with
national policy changes and community-led advocacy efforts
that hold local health systems accountable for services. In
El Salvador, a collaborative advocacy approach between
UCP Wheels for Humanity, World Vision, and local service
providers has raised awareness of appropriate wheelchair
provision in rural communities using billboards and local
advertising. In Kenya, World Vision advocacy groups have
engaged with service providers on the need to increase
service frequency in certain communities, and as a result
outreach events have increased.
3. CREATE GLOBAL SOLUTIONS
Wheelchair donors. Community development organizations
should communicate the impacts of 8 Steps+ to global
donors to demonstrate how a holistic approach to
wheelchair services supports donor processes and intended
outcomes. Donors are attracted to a strong presence and
robust existing programming in the countries of operation,
which allows donors, community development organizations,
and technical partners to work together for improved
outcomes globally.
In Australia, a partnership with Wheelchairs for Kids (WFK),
Motivation Africa, and World Vision Australia is founded
on the principles and requirements of the WHO’s eight
steps. With its global reach, World Vision is able to ensure
that children in remote communities access high-quality
wheelchairs. Motivation ensures WFK wheelchairs are fitted
through the eight steps. WFK advocates for wheelchair
provision, working to ensure all wheelchairs are provided
through trained service providers.
Wheelchair sector. Community development organizations
need to demonstrate the benefits that they bring to the
process of community education and social inclusion. This
will allow them to influence the broader wheelchair sector.
Technical partners traditionally view community development
organizations involved in wheelchair provision as disruptive.
Evidence is needed to demonstrate the appropriate and
value-added role that community development organizations
play in the sector. This will foster collaboration between
technical partners and community development organizations
that will give the technical partners access to individuals who
would otherwise be unreachable, and help the community
development organizations facilitate inclusive environments
for wheelchair users.
60% of World Vision offices using the 8 Steps+ approach are witnessing policy changes at the national level to accommodate the WHO’s guidelines on wheelchair provision.
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Case Study: Advocacy
National advocacy: collectively, we gain strength
In Kenya, the collaboration of ACCESS partners alongside the National Council for Persons with Disabilities and the government has resulted in national policy change that includes the WHO’s guidelines in Kenya’s National Policy on Persons with Disabilities.
The development of this policy was raised by an ACCESS partner at a stakeholder meeting. When it was originally created, this policy marked significant progress for Kenya, but there was no mention of wheelchairs or assistive devices.
Following the ACCESS team’s discussions with the government and increased advocacy around the importance of appropriate wheelchair provision, the team was invited to attend the National Disability Forum, alongside many key stakeholders. As a result, the team was given the opportunity to contribute to the National Disability Policy, and a task force was formed with the goal of ensuring assistive devices were adequately covered in the new policy. World Vision’s recognized impartiality,
scale, and influence led to the ACCESS project coordinator being given the role of chairing the task force.
With the input of project partners, an amendment to the bill was drafted. Article 20 aims to increase the availability, affordability, and accessibility of assistive devices and support services for people with disabilities. It includes adoption of the WHO’s guidelines, integrates Wheelchair Service Training Packages in the national medical curriculum, and subsidizes the cost of assistive devices through national health insurance.
If successful, this policy will ensure funding for education and services, allowing people with disabilities access to a stronger and more informed health system. This momentous achievement would not have been possible without strong partnerships between Motivation, the Association for the Physically Disabled of Kenya (APDK), and World Vision, which collectively advocated for the amendments and asserted their combined influence with the National Council for Persons with Disabilities.
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“Change begins with you.”
Education | Facilitation | Collaboration | Advocacy
—Jane Kamrou, wheelchair user, Kenya
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APPENDIX 1: FURTHER RESOURCES
UNCRPD
https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html
WHO Guidelines on the Provision of Manual Wheelchairs in Less Resourced Settings
http://www.who.int/disabilities/publications/technology/wheelchairguidelines/en/
WHO Wheelchair Service Training Package (Basic and Intermediate)
http://www.who.int/disabilities/technology/wheelchairpackage/en/
http://www.who.int/disabilities/technology/wheelchairpackage/wstpintermediate/en/
WHO Community-based Rehabilitation Guidelines
http://www.who.int/disabilities/cbr/guidelines/en/
WHO INCLUDE (a community-based rehabilitation [CBR] learning community)
http://www.who.int/disabilities/include
International Society of Wheelchair Professionals
http://www.wheelchairnet.org/
World Report on Disability: World Health Organization and World Bank
http://www.who.int/disabilities/world_report/2011/en/
Travelling Together: A disability-awareness training manual developed by World Vision
http://www.wvi.org/disability-inclusion/publication/travelling-together
On the Road to Disability Inclusion: A supplement to the Travelling Together curriculum, which focuses on disability
inclusion throughout the program life cycles
https://www.worldvision.org/our-work/disability-inclusion
CLASP: Consolidating Logistics for Assistive Technology, Supply, and Provision
http://www.clasphub.org
APPENDICES
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APPENDIX 2: A BRIEF EXPLANATION OF THE WHO’S EIGHT STEPS OF WHEELCHAIR PROVISION
1. Referral and appointment
People in need of wheelchairs are referred to health facilities through government, non-government, and community networks (such as World Vision).
Appointment times and dates are set for potential users to attend the health facility for screening and assessment.
2. Assessment (2 weeks – 2 months)
At the health facility, wheelchair users receive unique individual assessments where their measurements are taken and recorded to facilitate the accurate prescription and preparation of the wheelchair.
3. Prescription (selection) (1 day)
The wheelchair clinician speaks with the user and their family to understand their needs, their lifestyle, and the functions that the wheelchair will have in the user’s life.
In this user-centered approach, based on the physical assessment combined with user needs, the clinician and wheelchair user decide on an appropriate wheelchair and write a prescription.
A wheelchair prescription will include the type of wheelchair, size, and special modifications for each individual.
4. Funding and ordering (2 weeks – 2 months)
A funding source for the wheelchair is identified (government, NGO such as World Vision, etc.) and the specific type of wheelchair is ordered.
5. Product (wheelchair) preparation (1 week – 1 month)
Trained wheelchair technicians assemble the wheelchair and make adjustments and changes based on measurements in Step 2.
Technicians make modifications for each user, or for spinal support using other products.
6. Fitting (1 day – several days)
During this step, a wheelchair user tries out their new wheelchair. Adjustments and modifications are made to ensure that it meets their needs and that it is comfortable, in order to prevent secondary injuries.
7. User training (1 day)
At the end of the fitting session, new wheelchair users and their caregivers are instructed how to safely use and maintain the wheelchair.
The wheelchair user training is conducted.
8. Maintenance, repairs, and follow-up (after 2 weeks; every 6 months for children)
Follow-up or “check-up” appointments are made to ensure the wheelchair is fitted correctly and comfortably and to provide the user with further training and support.
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APPENDIX 3: THE 8 STEPS+ AND COMMUNITY DEVELOPMENT ORGANIZATIONS
Eight Steps of Wheelchair Provision
1. Referral and appointment
2. Assessment
3. Prescription (selection)
4. Funding and ordering
5. Product (wheelchair) preparation
6. Fitting
7. User training
8. Maintenance, repairs, and follow-up
The “plus”
Role of Community Development Organizations
• Refer people with disabilities to local health facilities trained in the WHO-WSTP courses or certified through ISWP competency assessments
• Ensure WHO’s eight steps are met at health facility
• Facilitate logistical elements of wheelchair outreach clinics on behalf of service providers and link other services to outreach events
• Reinforce basic skills with wheelchair users
• Follow up with wheelchair clients every six months and refer them to clinic for adjustments and maintenance
• Support local bicycle repair shops to conduct very basic wheelchair repair in communities
• Change community attitudes and raise awareness on disability inclusion
• Advocate for the rights of people with disabilities
• Empower wheelchair users
• Intentionally run disability-inclusive programs
• Ensure existing programs are disability-sensitive
• Identify and recruit community volunteers
• Collaborate with technical partners to train community networks in WHO referral and follow-up
• Understand service provider capacity and limits
• Leverage community networks to find the most vulnerable people and help them access services
• Collaborate with technical partners that can train health facilities and support community development organizations
• Work with local government and Ministry of Health to promote wheelchair provision as an integrated part of health services closer to communities
• Support peer mentors who can conduct wheelchair user training and support in communities
• Train existing community networks in referral and follow-up
• Keep records to ensure follow-up is done in the community
• Collaborate with technical experts to train local artisans or bike repair businesses in basic wheelchair maintenance
• Leverage existing advocacy tools for disability inclusion in partnership with DPOs
• Use wheelchair provision as a springboard for disability inclusion and tackle concrete issues for people with disabilities locally
• Conduct advocacy meetings with stakeholders and partners
• Develop peer mentorship and wheelchair user groups
• Train field staff on mainstreaming disability
• Sensitize stakeholders at education events
How?
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APPENDIX 4: SECONDARY INJURIES
When a wheelchair user receives a poorly fitted wheelchair, they can suffer secondary injuries. These injuries are easier and
far more cost-efficient to prevent than treat, and if left unchecked they can become life-threatening.24
• Pressure sores are areas of skin that are damaged by remaining in one position for too long. Pressure sores or ulcers
happen when wheelchair users are provided with incorrectly fitted wheelchairs, do not have a proper pressure-relief
cushion, or spend long periods of time without movement. They can take up to a year to heal, and if left untreated
they can become infected and lead to death.
• Spinal deformity (scoliosis) is a permanent curvature of the spine often resulting in severe postural problems. It can
be caused by using a wheelchair that does not provide proper postural support or fits poorly (i.e., children being given
adult-sized wheelchairs). It can contribute to permanent spinal curvature often leading to chronic back pain.
• Shoulder injuries involve damage to muscles that make shoulder movements painful or impossible. They can be caused
by using a wheelchair without proper postural and leg support or by sitting in a wheelchair that is too large or too small.
• Contracture is a tightness in the joints that can make it impossible to straighten limbs. Causes include the incorrect
positioning of the wheelchair user’s body in relation to the wheels or using a wheelchair that is too large.
For more information, see the Guidelines on the Provision of Manual Wheelchairs in Less Resourced Settings, linked in Appendix 1.
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2WHO. (2008). Guidelines on the provision of manual wheelchairs in less-resourced settings. World Health Organization. Geneva.
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REFERENCES
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